We're a passionate team of six individuals, each driven by a deep commitment to improving the lives of children and teens with Ehlers-Danlos Syndrome. Together, we bring a diverse range of experiences, perspectives, and ideas—but we’re united by one mission: creating a better, more supportive future for those living with EDS.

We hold monthly board meetings to stay aligned on current projects, plan for what’s ahead, and share progress on our individual SIS initiatives. These meetings also give us a chance to connect, collaborate, and support one another—because strong leadership starts with strong relationships.